Hi Marion My partner started on trials today he was allocated to ctd group.Have found the last couple of weeks mind blowing.So much to take in and so many visits to hospital.Then coming to terms with illness and how it will effect future life.It is early days for us,the amount of tablets is mind blowing.CTD drugs then pain releave plus tablets…[Read more]

Hi Marion,

I'm currently on the Myeloma XI trial and got the revlimid (lenalidomide)branch of it. It seems like the side effects are different for everyone but I have to say that I have had minimal side effects in the grand scheme of things. Tiredness, tenderness and some breathlessness and awful tastes seem to have been the worst for me (oh…[Read more]

Min you got me as well!!!! I was trying to figure out where you would get potatoe bags!
Jean

Haha Min I love it!!Got me with this one Bridgetx

Hi David thankyou that was the funniest thing I have seen in ages Bridget x

Hi

I loved thye frog dance it made me laugh for ages thank you

LOVE JO 😎

Hi Chris

I also had a rash on my body during CTD, it soon went 😀

Do you go to the AE at hospital with Hubby?? me I have been told if I have anyproblem to phone our Onc ward and speak to the Consultant or the Staff Nurse, they have more knowledge about the MM

Good Luck

Tom "Onwards and Upwards" xx

Hi Chris

And am I pleased you joined us 😀 but sorry you had to 🙁

I am sure you will all cope with whatever is thrown at youe and Hubby (sorry you didn't say his name)

Dont forget we have you now so pull up the chair and ask say what you want, we are all here for each other 😎

Tom "Onwards and Upwards" xxx

Hi Chris welcome I am sure you will get lot of support from all the lovely people on here It took me a long while before I even looked at this site , a form of denial I think Unfortunately not all people even try to understand myeloma but its very sad that your husbands family are so unsupportive . Grandchildren are a special joy arent they , I…[Read more]

Hi David

I feel so disillusioned!!! I thought I was great doing my Wee Fit!!

REgards Jean

Hi Norman,

Sorry to hear that you have levelled out on Revlimid. I thought you might be interested to know that the same seems to have happened with me. 4 cycles in, and after an initial drop from 50 to 32, a second drop to 27, I have now gone back up to 28 and it looks like I will also be going onto velcade (or coming off the Myeloma XI trial…[Read more]

Hello Kevin
so glad you are back sorry you have been so ill I am glad you are a resiliant sod I have missed your posts and wondered what had happened to you

Keep Well Love Jo 😎

Hi Kevin its good to have you back .You have certainly been through a tough time and being in hospital that long must have driven you crazy!!! Heres hoping its a very long time before you have to go back there . love Bridget

Hi Sylvia
And That we are (optimistic that is he he) me I dont think April is too far out? so the crossing to Cork should be OK

I used to hate the heat and sun and love the wind rain and snow But since getting MM you could throw me all the sunshine that you can because I defiantly feel the cold these days8-) so the sooner the better and…[Read more]

hello jET

Iam not in the under 50's group as I am a bit older but I read your post then your blog you seem to have had the same experiance as me I was diagnosed jan 2009 my kidneys have not recovered enough for an SCT this was my my choise as the chemo involved with the transplant could have destroyed my kidneys completely I could not bare the…[Read more]

Hello Kath

I hope you dont give up you have been a real inspiration to me I also could not have an SCT and reading that are still here 9 years later gives me a lot of hope that I can achieve something like it

Much Love Jo x

Hi Kath lovely to hear from you but I am sorry you are having such a rotten time As you say it becomes a balancing act to gain some quality of life when these drugs rule our lives. At the moment I am hoping like mad that next month will be easier as I am fit for nothing most daysWhat I find really frustrating is when you have a day where you do…[Read more]

Hi Jet sorry you have had to join us but welcome to the most supportive group ever! I am on my first cycle of Revlimid too and I have been struggling Like you I am on Dex for four days, 20mg a day, and 25mg Revlimd daily over the three weeks Most of the side-effects you describe can be put down to dex but I think they are magnified when taking Rev…[Read more]

Hi Norman I had my sct at UCH London , the team is led by Dr Kwee Yong who is pretty well known in the myeloma world Food was pretty much what you would expect but you are in your own room so wouldnt disturb anyone one with your own grub Macdonalds over the road and major supermarkets 2 minutes away I used my laptop with a dongle no problemswith…[Read more]

Hi Gaye

April 15th MMmm Interesting

I think it could be today 😀 well we dont need the sun 😎 do we? we just need to be a wee bit daft he he.

Photo to follow ha ha.

Weekend nearly over and a new week ready to kick off, hope you all had a great w/end and are looking forward to the new week 🙂

Have a Good Un

Love
Tom…[Read more]